Always interesting, often different

Archive for the ‘Medical’ Category

Last year I got an invitation to participate in the Chronic Illness Inclusion Project (CIIP). It’s run by an amazing woman called Catherine Hale whom I’ve now got to know well.

The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.

We often use the word spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this concept makes sense to us and it’s easy to explain to others it’s not one that is easily recognised by medical professionals.

The CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.

Whilst I love using the term spoonie and have badges with a spoon on then I can understand why some people think that we need different terminology.

Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted.

We’re not “just tired” as people seem to think, it’s more fundamental than that. It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.

For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I spend two hours having a shower and getting dressed when I’ve got nowhere to go.

That’s my personal choice and one of the things that gets me so mad with social workers and occupational therapists is that their focus is about pushing me to do tasks which make me too exhausted to enjoy the end result.

How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”. That’s no way to live.

We need to explain to medical and other professionals that being energy impaired has a huge impact on every part of life. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition.

Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day.

If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks.

That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them.

We talk about people having a visual or hearing impairment so why not talk about being energy impaired?

I’m going to start using this new term my blog and elsewhere. I hope and believe that it can change the way we are perceived.

If other disability bloggers and activists use the term energy impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.

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Having decided that I would explore the benefits of using essential oils, the first one I tried was a blend called Balance. It is an amazing mix of Spruce, Ho Wood, Blue Tansy, Frankincense and Blue Chamomile. For me it helps when I’m anxious or feel overwhelmed either by things that are going on in my life or what I need to do. I also use it when I’m going into stressful situations, such as meetings I know could be difficult. It helps to make me feel more grounded and keep things in perspective.

From buying Balance, I joined a Facebook group which is run by Rachel, the person who introduced me to dōTERRA. The group is a lovely safe place to chat on line with others who are also learning and Rachel posts some brilliant hints and tips.

One of the articles Rachel posted was about the pain relieving and anti-inflammatory effects of Copaiba. I began to wonder if it might help me as some people have found it helps to reduce the effects of neuropathy. I have quite bad neuropathy in both my feet as a result of trapped nerves in my spine.

I researched Copaiba online and discovered that it is derived from the resin of the copaiba tree which can grow upwards of more than 100 feet and can be found in tropical South America. Copaiba oil is widely used in cosmetic products including soaps, creams, lotions, and perfumes. Since the 16th century, copaiba essential oil has been utilized in traditional health practices by the natives of north and northeastern Brazil. Copaiba can help soothe anxious feelings and it can be applied to the skin to promote a clear, smooth complexion. Taken internally, Copaiba essential oil supports the health of the cardiovascular, immune, digestive, nervous, and respiratory systems. Although Copaiba does not contain psychoactive cannabinoids, the main component caryophyllene may be neuroprotective and have cardiovascular and immune benefits. It’s also a powerful antioxidant that promotes immune health.

All of which sounded good to me! But there was one problem, at the time dōTERRA only sold Copaiba in the US (it is now avaiable in the UK) and I didn’t have the contacts to buy any from there. I did discover another supplier who would ship direct from India, so I bought some and blended it with Frankincense, Oregano, and FCO (fractionated coconut oil). Having put the blend into a rollerball bottle I applied it onto the soles of my feet just before going to bed. I was amazed that during the night that I only woke once instead of several times and that the discomfort in my feet reduced considerably.

I can also get severe pain in my back, usually caused by muscular spasms. Usually I would take Valium to reduce the spasms, but I decided that next time I had a bad pain attack I would get my partner to put some directly onto my spine.

Essential oils work quickly, in 22 seconds the aroma reaches the brain, in 2 minutes they reach the blood stream and by 20 minutes they affect every cell in your body.

I was amazed that within 10 minutes the spasms in my back had reduced and by 20 mins they had gone completely. With conventional medication that would normally take at least 30 mins and often and hour and then it would often return again 1-2 hours later. Each time I used the Copaiba blend the spasms didn’t return.

The more reading I did the more I was concerned that the Copaiba I had bought really wasn’t pure enough. The oil smelt good, but it was very cloudy, and therapeutic grade oil should be clear and pure. Also it came with no certification or indication of what tests were done to ensure safety and purity. I needed to buy the genuine oil.

I was fortunate that I found a group on line where people swap dōTERRA oils or sell on their overstock. I found two sellers who were willing to ship to the UK and I was soon the proud owner of 4 bottles of Copaiba.

I now have the purest form of Copaiba, a certified therapeutic grade oil. I could begin to try to find out if ingesting the oil would enable me to reduce my use of Tramadol. Oils can be ingested by either drinking in water – 1-2 drops is all you need, or by making up your own capsules. I decided to try the capsules because they would be the easiest to carry around with me.

Empty gelatine capsules are easy to buy and I also got some capsule holders so that it was easy to fill them. With help from my partner I filled about 30 capsules. I used 2 drops of Copaiba and topped up,with 3-4 drops of FCO. I learned quickly that you need to make sure the capsule top clicks tight!

I then began to replace my lunch time dose of Tramadol with one capsule, that worked well and after a few days I replaced my evening dose with a Copaiba capsule. I have only had one pain spike in the last 4 weeks when I have needed Tramadol and that was after a fall.

So I am now taking 50% less Tramadol than previously. I doubt that my pain levels will allow me to completely come off Tramadol. But to have reduced my dose so much is wonderful. Essential Oils have made a massive and positive change in my life.

Like this:

A combination of long term medication is something that many disabled people use to control the pain we deal with each day.

From time to time various scare stories appear in the press and sometimes we find ourselves have conversations or even arguments with a GP who seems determined to stop prescribing medication that works well.

Everyone is different and each of has to find the best way for ourselves.

For several months I decided to use a cannabis spray to try and reduce the amount of Tramadol I was taking. On a bad day I was taking the maximum dose of 2 x 50 mg four times a day. The cannabis spray definitely helped and I began to drop down to 2 x 50mg 2 or 3 times a day. But the taste was pretty vile and I wanted to look at other options.

I’m part of a Facebook group for wheelchair users, which aims to share hints, tips and ideas for making life a little easier. One day there was a post about using essential oils for health benefits and I decided to explore.

What I found out absolutely amazed me. I have used homeopathy and alternative medicine for many years and found it to be very beneficial for things like headaches, cuts and bruises as well as healing after surgery. But using essential oils is another world all together.

The first thing I found was that there are a myriad of companies out there selling oils. Some are organic, others say little about their origins and their bottles don’t say where the oil comes from.

I spent ages researching as much information as I could find and learnt a great deal about how oils worked both physically and emotionally. There is a good amount of research and some really interesting studies. What struck me was the way that both Doctors and Nurses were involved in these studies and use oils in their practice.

There are three main international companies who sell oils. One is based totally in the US with no UK distribution system, so that ruled them out for me. Another company is mainly in the US, with some distributors in the UK. They grow most of the plants and trees in farms they own in the US, with few from other parts of the world.

The third company is the newest and is called dōTERRA, meaning gift of the earth. They became my choice for four reasons:

ETHICAL FARMING

doTERRA’s process of sourcing is intended to provide powerful essential oils as well as create an industry that uplifts and instills hope in farming communities around the world. This process is called Co-Impact Sourcing.®

doTERRA Co-Impact Sourcing helps local artisans in countries such as Haiti, Somalia and Indonesia. They can provide for their families, obtain sustainable jobs, and have hope in their futures.

PUREST OILS

The more pure the essential oil, the more powerful the results. Many essential oils available to purchase are not pure. Often, they contain fillers or other elements that dilute and alter the purity, thus diminishing the healthful qualities of the oil. In order to guarantee that the oils you use are pure, doTERRA and a team of highly skilled professionals formulated a successful testing procedure that qualifies doTERRA oils as uniquely pure and free of contaminants. This quality protocol is called CPTG Certified Pure Therapeutic Grade.®

HEALING HANDS

The doTERRA Healing Hands Foundation™ partners with Operation Underground Railroad (OUR Rescue) to bring healing and hope to the world. OUR Rescue exists to rescue children from sex trafficking by utilizing some of the world’s experts in extraction operations and anti-child trafficking efforts.

The children rescued from these extraction efforts are then rehabilitated by OUR Rescue’s aftercare program, and the perpetrators are arrested, tried, and convicted to ensure that they don’t traffic children again.

SUPPORT AND REWARDS

dōTERRA has amazing Wellness Advocates who will help you to explore the oils and find which ones are best for you and your family. There is no sales pressure.

You can become a wholesale customer, get 25% off all your purchases and then get points to enable you to get oils for free. You don’t need to sell to anyone. For those who want to make money, there is lots of support to help you build a business.

My next blog post will talk about the oil I found that has enabled me to cut my Tramadol use by 50%.

A couple of weeks ago I booked to see my GP. I had a very swollen right foot. This had started about 2 weeks beforehand. It was not improving even when I was sitting in bed with my feet elevated.

My leg was slightly swollen, but nowhere near as much as my foot. I also had some discolouration. Thankfully I had no extra pain.

Having examined me carefully my GP was concerned that I might have a Deep Vein Thrombosis. My only previous history of DVT was 40yrs ago, when I was on the pill. My GP was also concerned that I may be at risk of Pulmonary Embolism, a clot of blood on my lungs. I had been getting increasingly breathless – though I did not feel it was any worse than when she saw me in April.

But, being as thorough as ever, my GP advised me to go to my local Accident and Emergency Department ASAP. She printed off all my medical notes to take with me.

So, less than an hour later I was at a large London hospital. I was checked in at the desk immediately and only had to wait 10 more minutes to give all my details to the clerk. At this point I will admit to feeling slightly scared, I really don’t want or need another medical issue or diagnosis.

90 minutes later I was seen by a highly experienced professional Triage Nurse called Natalie. My BP was raised at 186/92, my pulse was 124 and my oxygen saturation levels were 92. Both of the latter results are fairly usual for me. My severely reduced lung function had at least, not deteriorated.

Natalie quickly did an ECG – electrocardiograph. This did not show any abnormal rhythms. Despite everything being ok, Natalie made the decision to take me round to the major treatment area to be seen by a doctor.

Within 5 minutes I was seen by Dr Elle. She quickly put a cannula in my hand and took bloods from me. The main test I was going to have was a d-dimer which can show if there are high levels of fibrin in blood. This can give a good indication of the likelihood of having a blood clot in my lungs or leg.

The results would take an hour to come through, so I settled down to read my kindle again. Dr Elle had explained to me that the hospital protocol varied, depending on my results. If my d-dimer was raised, I would have an immediate CT scan and possibly be admitted. If the results were ok, I would be sent home with a short course of blood thinning medication. I would then return for an ultrasound scan of my leg after the weekend.

Thankfully my results were negative – whew!! I was so relieved!!

I went home, rested and took my medication over the weekend. I returned to the hospital on Monday for my scan. That too was clear.

Within another week the swelling on my foot was greatly reduced. What caused the swelling remains a mystery.

I couldn’t help but be grateful for all the wonderful care I received. Whilst Dr Elle was fairly sure I had nothing seriously wrong, I was treated as though I did. The reassurance of knowing I would have those tests was priceless. Yet it is so often something that we in the UK take for granted.

We still have a great NHS despite the efforts of this ghastly government and its predecessors attempts to destroy it.

When I hear of those in the US who cannot get good health care or the level of health insurance they need, it makes me even more determined to campaign to keep our NHS free at the point of use.

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Last month I watched my Royal College of Nursing colleagues give Jeremy Corbyn a standing ovation at the end of his speech to RCN Congress. I felt proud of the support they gave him.

But 24 hours earlier the RCN made a worrying announcement. They have been balloting nurses about the current pay crisis. 91% of nurses said they’d take industrial action short of a strike. 78% of members who completed the poll said they were prepared to go on strike. This is the first time in 101 years of the RCN that nurses have decided to strike.

I have been a qualified nurse for 40 years. Never in my career have I known nurses wanting to strike. We’ve previously protested about pay. As a student nurse in the 1970s, I and many of my off-duty colleagues marched through the streets of Exeter. I will never forget the reaction of some of the by-standers. Whilst the majority were supportive, some spat at us and accused us of killing patients by being on the march. Nurses were only allowed to march if off duty or given formal permission by a Matron. No patient care was affected by our actions. It took some time for my student nurse pay of £11 a week to improve!

RCN members have now voted at Congress to begin a summer of planned protests. And so they should. There is currently a 1% cap on public sector pay rises. Unless there is a change of government, this will continue until at least 2019-20. The effect being that the average nurse has suffered a real-terms pay cut of 14% since 2010. This is not acceptable. Nurses are now being forced to use food banks.

Our professional registration and indemnity insurance fees have risen. We have to pay these before we can work. Pay and conditions are worsening. Most nurses are now working long 12 hour shifts. When I started to train these had just been phased out, apart from Night Duty. We were told that such long shifts meant nurses were too tired and could make mistakes. Why is the same advice not valid now?

What can nurses do to highlight their plight? There are few actions they can take without jeopardising care. Working to rule, what would that involve? Not staying on after a shift has ended if there is an emergency? I guess some nurses if they have pressing family issues, such as collecting children from nursery, may feel they can’t stay on. But most nurses I know would willingly stay on to help. Not helping a patient in some extra way? I doubt it.

What would I do if I were still working in the NHS? I really don’t know. I would certainly ‘cover’ so more junior nurses can protest in some way. I suspect when it comes down to taking strike action, most nurses will be very reluctant. I went into nursing because I cared about people and wanted to learn how to help people get better. That still holds true for nurses today. The word vocation may be rarely heard, but nurses still care, deeply.

This current government knows this. It’s why they have treated nurses and other healthcare workers so disgracefully when it comes to pay and conditions. Theresa May did not even bother to acknowledge her invitation to the RCN Congress. Whilst the two other party leaders did attend, Theresa was nowhere to be seen. There are 675,000 nurses in the UK how many votes did she loose?

I have seen at first hand over the last 6 years how hard nurses work. During that time I’ve had 4 different operations as well as other treatment. Most of my nursing care was good. I saw nurses having to care for confused and elderly post-operative patients in a High Dependency Unit. The unit was understaffed, the nurses not adequately trained. There were not enough doctors on duty either.

Visiting a friend in a psychiatric hospital last year, the picture was the same. The ward was chaotic and noisy, with not enough staff. There were no extra staff to provide activities either. The reason? More bed closures including the specialist high care unit.

Yes, nurses can protest outside hospitals or Downing Street. But I cannot imagine any nurse leaving the ward to actually withdraw their labour. In itself that would be a breach of the NMC Code of Conduct. Nurses could refuse to do overtime. But the effect of that will be to reduce their pay even further.

All I know, is that when nurses are protesting – I will join them. Both as a patient and a nurse.

This is the week organisations and employers are encouraged to make sure they have structures in place to support staff who may have mental health issues.

It is also a week for some to feel able to talk about their own mental health diagnosis. Another way of marking the week, as many election candidates have done, it to look at ways our NHS should be doing more to prevent young people going into crisis.

But for me, this week has been one of stress and worry, which could easily be resolved. Under the cruel Tories, I and so many disabled people continue to suffer unnecessarily. I receive DLAand was given an indefinite award 8 years ago. I should not need to be re-assessed. But then the rules changed. Everyone, no matter what their condition, has to be checked up on. This includes people who were born with severe mental and physical disabilities who cannot do anything for themselves.

Two weeks ago, the dreaded envelope dropped through my letter box. The DWPrequire me to complete a 24 page form asking asinine questions about my health and what I can and cannot do. This week I have to return it. The irony and randomness of having to so during Mental Health Awareness Week is not lost one me.

Luckily, I’ve recently registered with a new GP and seen a new Consultant so my ‘everything you need to know’ A4 sheet is up to date with diagnoses and medication. I have also got a supporting letter from a Nurse who knows me well. I have warned my GP and consultant they will most likely be contacted.

I have 5 long term conditions, none of which will ever improve. I understand and accept that. But the DWP tick box managers clearly do not. Every 2-3 years they send me another form to complete, with questions on it that bear little relation to my everyday life. Can I lift or move a box? Can I put a pen in a top pocket? Can I touch the top of my head?

Those of us with arthritic conditions, blood disorders or neurological symptoms, my friends with MS or Parkinson’s, all of us have to go through this stressful process. It is totally unnecessary. The DWP could, much more cheaply, employ Doctors or specialist Nurses to paper-check on-going claims. This would ensure those of us who can never return to full health, will retain our allowances. People who may have been debilitated after an injury or by an illness which is curable, would also be assessed and either be transferred to long term benefits or supported back to work.

The same could be true for the many people I know with mental health problems. Some people with a mental health diagnosis will never be stable enough to hold down a job. Forcing then to try and do so is most likely to end up exacerbating their already fragile mental health.

So this week, I’m merely surviving. I want to thrive and focus on my writing projects, and doing some cyber campaigning for the election. But that’s not possible. I have the Sword of Damocles hanging over me. Will the money I need to live on be cut? Will I keep my car, which is my absolute life line? These are the thoughts that occupy my waking time and stop me sleeping at night.

What would enable me to thrive? An questionnaire checking up to make sure I have enough support and care hours? That might help ensure I can live something approaching a normal life. The questionnaire could check if I’m socially isolated. Thankfully I’m not, but so many people are. It could also ask if my home is safe to live in, am I free from harassment, and if I can afford to keep warm in winter?

All of those things would improve my life. Filling out a form to tell someone, with less qualifications than me, the obvious only causes me and all other disabled people stress and distress.

Maybe next year the focus of the campaign should be to get politicians to understand how to help us thrive and not be burdened with having to just survive.

Understand what medication you have been prescribed. Know their names and how they work. Also be aware of both the generic (scientific) and proprietary (Pharmaceutical or trade) names.

There are lots of online resources. I find this one the best. You can also try this NHS sitewhich gives more of an overall view.

By understanding what your medication does, you are also able to be alert to side effects. But beware – these can sound very scary. Also, not everyone suffers from these side effects and you certainly won’t get all of them. If you are someone who is aware that you may be easily influenced, give the information leaflet to a close friend or family member who can check side effects for you if you are worried.

7 Always report drug side effects

If you are having side effects from your medication, note them down. Use your notes when you go back to see your GP. If you feel you are getting more side effects than benefits from a medication – don’t be afraid to ask if you can try something different.

The same medication can work differently on different people. Just because someone you know had side effects from a medication doesn’t mean you will too.

8Don’t be afraid to say no!

If you really cannot cope with the side effects from a medication, it is your right to say if you no longer want to take that medication. You should always discuss this with your GP first. But ultimately, it’s your body and your choice.

One of the most common drugs prescribed in the UK are statins. They are very cheap, and are given to patients who have raised cholesterol. One million people were prescribed statins in 2011.

But thousands of people also suffer side effects from statins. The most common of these side effects are muscle pain and cramps. There is also a risk that statins can increase your chances of getting type 2 diabetes. Statins are often prescribed to reduce a risk of heart attacks caused by high cholesterol. Opinion on statins is divided, even between doctors themselves.

My own, non-statistical, view talking to friends and family members who have taken statins, is that the side effects some people experience are considerably worse than the risk involved by not taking statins.

That is my personal choice. If you need to make a decision about statins, or any other medication please discuss your options with your GP first.

9 Check about supplements

Many of us now take vitamin and other supplements to improve our health. But did you know they can interact with prescribed medication?

Check out what you are taking or considering buying with your GP. The same advice applies if you are seeing a hospital consultant. Please also tell the doctors or nurses if you are going to have investigations or surgery.

10 Not all GPs or practices are good

Sometimes things go wrong. Try and resolve you concerns with the GP themselves. If your concern is about one of the reception staff, speak to the practice manager. Your complaint may help them deal with an ongoing issue.

Where I previously lived in West London, there was an arrangement for my the nearest Chemist to pick up scripts from my GP’s surgery at least once a day. Usually this system worked well. I would order my meds on line and the script would be at the Chemist two days later. The following day I could have my meds delivered.

However on several occasions prescriptions went missing or couldn’t be found. If I phoned to check what happening there was one particular receptionist who used to get very angry and defensive. On two separate occasions she accused me of lying about what the Chemist had said to me.

The first time I just thought she was having a bad day. But on the second occasion I spoke to the Practice Manager. It turned out there were some ongoing issues with this particular staff member. Not only was the prescription collection system improved but the incident was used to try and help the Receptionist’s skills training. I stayed with that practice till I moved

Learn about the care other GP practices give disabled people. If you find you have chosen the wrong GP – find a better one. Poor care is not acceptable and you have a right to change your GP.

Like this:

Carol Midgley’s Comment article in The Times todaystrikes an arrogant and unrealistic tone. Her assumption that the new NHS campaign #endpjparalysis is good for everyone is not correct or helpful.

I fully understand the need for post-operative patients to begin to mobilise as quickly as possible to prevent DVT. But the presumption that every NHS patient should be up and dressed during their time in hospital is not realistic. Who is going to help those for are too frail or ill to do this for themselves?

I’ve had 5 hospital admissions in the last 4 years. Each time I have needed help from nurses to get dressed. Many elderly and frail patients do not even get help to eat their meals in hospital. Who is going to help those people to get dressed?

19% of the UK population is disabled in some way. We are also likely to make up the majority of patients on any ward. Another article in the same paper talked about the rising number of bed-blocking patients. The reason: there was no social care available for vulnerable people. That care is needed precisely because people cannot do basic tasks for themselves. Forcing all patients to get dressed gives a false impression to Social Workers of how fit people actually are.

I’ve had Social Workers seeing me at home, dressed, but lying on my bed. They then presume that I’m capable of cooking a meal without help, or doing a myriad of other household tasks. I have most likely used up all my energy for the day, getting that far. Because they see me looking ‘respectable’ a whole set of unrealistic expectations appear in their thinking. These become intrenched and are difficult if not impossible to dispel.

Carol’s final point about needing to wear a bra to feel “fully functional” struck me as particularly ludicrous. Lots of disabled women find it difficult, if not impossible to wear a bra. This is especially true for those of us with arm or spinal problems. Those of us who are fortunate enough to be able to work in some way, may not have the choice to dress as she does. So, Carol, next time please check your ability privilege, before making your judgements.

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Finding a good GP is essential if you are to get good support and the right medication. It also matters when you need a hospital referral. Because of my nursing background, I also expect visits to my GP be an equal two-way conversation about medication or treatment.

Most GP’s surgeries allow you to order regular medication and book appointments on line. It’s well worth learning how to do this – it really isn’t difficult. Booking non-urgent appointments and ordering medication from home saves time and energy too.

I use the Health app in my iPhone to store all my medical informations. There are similar ones for other phones and they can be accessed even if your phone is locked. If you don’t trust technology make sure you have information available in case of emergency. Some people use Message in a Bottle.

If you have life-threatening conditions or allergies you may want to consider MedicAlert. They do charge a yearly fee, but provide a great service.

1 Do your research

Ask friends and neighbours, especially those with health problems. If you need a GP who speaks your language, make sure that there are at least two GPs in the practice you choose that you can talk to. The same rule applies if you prefer to always see a woman GP.

Check the Surgery out on line: the CQC is an indepedent inspection body who rate all GP practices on a variety of standards

There is a totally independent site. It’s a great place to check. Their reviews are straightforward and give clear percentages for each question.

This NHS run site allows patients to give their own ratings on different services. I don’t find it as helpful as it tends to cite only the best or worse experiences.

2 Don’t think the nearest GP is best

Never chose a Surgery because it’s the nearest one to get to. I have to pass two GP practices to get to see my GP and it’s well worth the extra time.

My friend Sue who lives the other end of London to me, chose her GP because he was nearby. Sue has type 2 diabetes and in the last 3 months has had 3 leg infections with blisters on her skin. Her GP wouldn’t send her to specialist Diabetic Nurse. He refused to give her a glucose monitoring kit. She was told she couldn’t see a specialist Tissue Viability Nurse about her dressings. She was also told to pay for the wound dressings.

The way she was treated not only broke NHS guidelines, but could have severely endangered her health. Because the NHS is short of money, Sue presumed that what she was being told was ok. She felt she didn’t ‘deserve’ any more care because it was too expensive. I was furious when I heard about this.

I spoke to Sue and explained the care she should be getting. She is now with a better GP. Although the surgery is a 10 minute bus ride away, Sue is getting referred to the right specialists and she will get the right care.

3 Speak to a GP before signing up

If at all possible, ask to speak with one of the GPs at the practice you are considering. This is especially important if you have a rare condition or multiple interacting conditions. You can often get an idea of they way you will be treated in future by the response you get to your request.

Also GPs who are training practices are often more up to date on new treatments and complex conditions.

4 Find more than one good GP

Most GPs work in group practice settings. So whilst you maybe registered with a specific GP you can be seen by any GP who works there. You will probably easily find one GP who you have a great rapport with. But, GPs have holidays, are sick themselves or they go on training courses. So find at least one more GP in your practice who will know you and can look after you if you need something urgent when your GP is away.

5 The power of paper

When seeing a new GP or hospital doctor for the first time I always take with me a concise medical history of the 12 operations I’ve had as an adult, my current medication and the allergies I have. This paper also lists the 8 conditions I’ve been diagnosed with and a summary of my current issues. This makes consultations much more focussed and doesn’t waste valuable time going over irrelevant stuff. It also means the Doctor has everything in front of them if they need to write referral letters or evidence letters for Social Services and the DWP.

Like this:

As disabled people we often have a more intimate interest in our bladder than most. At the most extreme end catheters of various sorts are involved.

I have one close friend who has a supra-pubic catheterso we often talk about the problems she has. Supra-pubic catheters are only usually used for people with severe spinal damage or who have had multiple problems using urethral catheter, i.e. one’s that go in through the urethra.

The articles written by The Times columnist Melanie Reid – who is now tetraplegic following a riding accident describe only too graphically the very small gap between a healthy bladder and severe and life-threatening sepsis.

When I first realised I needed to limit my trips out to places where I could plot a route between loos, I determined this would not restrict me. I remembered about a card I could carry. I also knew that I could take medication.

The medication I take is Oxybutynin which is used to treat people with irritable bladder syndrome and other related conditions.

Oxybutynin can be taken in tablet form or as a patch. Please be aware there are alternative options and that Oxybutynin does not suit everyone. I’m fortunate, it works perfectly for me in that my bladder control has greatly improved. I no longer have to desperately rush to the loo more often than is convenient.

This is specially relevant for me in the mornings. I often wake up with severe numbness in both my feet and at least one of my hands and some times both. It can take up to half an hour for my body to decide to start working properly. Prior to medication I would usually end lurching sideways and hitting myself on some furniture or at worst, completely fall over.

For those who want a non-interventionist approach – there is the option of badder re-training. A leaflet from Kings College Hospital, London gives lots of good information.

Some women find Kegel exercises help and wikihow has a great set of instructions.

There are also Kegel exercises for men which are sometimes advised after prostate surgery. This is the link to a useful US leaflet.

Bladder problems are not inevitable whether you are disabled or just getting older. There is plenty of help. Some medical professionals will try everything not to prescribe you medication. But you have a right to access the treatment you want. If you are refused treatment, seek further advice from another doctor or specialist nurse.